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Is Thalassemia a Big Enough Problem to Justify Research into a Cure?

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Andy Battaglia:
Ashish has also written Oprah...and is also still waiting. Anyone have any ideas on how to get an "in" with Oprah?

I do have some  ideas for guests and approach but would prefer to keep them private at the moment, as we have been visited frequently lately by people who have no qualms about stealing ideas and claiming them as their own.

jzd24:
Ah, I understand. I'll look into the Oprah thing, also. Merry Christmas to all, Jean

Manal:
Thanks Andy and Jean for the nice compliment.   :hug But i want to let you know that any thing that you think is positive in these efforts is because of you guys. All the support and faith that one gets in this site inspires me with a lot of things. If any thing good happenes , it is because of you all .

Anyway, here is the last update, i was able to meet the producer of the show. When i started talking aout thal, he told me that this considered an old issue cause they talked about thal before , three years ago when one of their collegues in the studio discovered that his daughter was a thal major. For a moment i was disappointed and felt that the man agreed to meet me because the one who arranged the meeting was the office manager of the network owner. Actually, i started telling him that he can make a new approch in discussing thal like, DNA tests before marraige, subsidizing the exjade, pre natal diagnosis,......etc and these issues will all lead to thal at the end, and then i started to tell him the statistics that Andy spoke about  at the begining of this topic. ONLY, at this point the guy started listening carefully, he was totally shocked from the percentages of carriers either worldwide or locally in Egypt. That was the only thing that grasped his attention and made him very positive and interested to know more information. SO MANY THANKS TO YOU ANDY FOR THESE VALUABLE STATISTICS THAT SAVED ME IN THIS MEETING. I guess that normal people get interested when they know about the possibility of being a carrier as this could be a threat either to them or to their partners without knowing. When you talk about a disease , normally people are not interested as long as they don't suffer from it ( i used to be like this ) ,but when you tell them you could be a carrier and you don't know , they get really very interested. Anyway, the guy promised that he will do an episode about thal this month(hopefully) and he told me to send him any material that can help. I suggested to have a in the episode a hemeatlogist, someone from Novartis, some one from the health ministry, genetic councellor and a patient if any agrees. I will call him again on January 6th to put things in action, but he promised he will do it.
Concerning the Novartis people, they did not agree to come to the show because they say it is against their policy to appear in the media and talk about the exjade as medicine or to discuss subsidizeng the medicine in the media, but they told me that the hematologist is free to talk about the medicne and anything else related to Novartis or the exjade,but they are not allowed which is not conviencing to me.
Anyway i will keep you updated after i call him on Jan 6th.

Love you all
Take care
Manal

Kathy11:
Hi Manal.
Thank-you for all your effort ,and care towards the recognition,research and awareness for  all thals patient.good work
I hope all your hopes and dreams eventuate in the new years.
Love Kathy :hug :hug :hug :hug :hug :flowers :flowers :flowers :flowers :flowers :flowers :flowers

§ãJ¡Ð ساجد:
Hi Manal,

Nice progress! Great going! :thumbsup

Hoping the best for the rest!  :happyyes

Take care, Peace!

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